Patient Support Groups


Patient support groups are important for advocacy, activism and even pushing key research forward. In Europe and the United States, patient support groups have played a key role in bringing in new drugs and treatment. For ex: The Alkaptonuria Society (AKU Society) in the UK played a major role in researching drugs for repurposing towards AKU treatment.

Patient support groups also bring together patients across the country and provide a sense of unity and dispel the feeling of being alone in the fight against rare diseases. Patient support groups have been active in India in advocating for rare diseases and even shaping policy outcomes.

Please find a list of patient support groups according to your disease type.

  • Hemophilia
  • Thalassemia
  • Primary Immune Deficiency (PID)
  • Muscular Dystrophy
  • Multiple Sclerosis
  • Osteogenesis Imperfecta